First let me address some awesomeness!! Claudia successfully completed her first cheer competition. This is huge, especially since the night before it was 80 degrees and the morning of the competition it was 33. We are learning how to deal with her hip so Friday night we iced her up, gave her ibuprofen and wished for the best. Honestly it could not have gone any better. Those girls worked hard, looked great and did amazing. I am 100% sure when she wakes up today she is going to be in some serious pain, however she has already told me it was worth it. So starting on Monday we have added a new class for cheer and she will be trying out for the competition team this spring. Here are a couple pics from yesterday
We head to Vanderbilt on Wednesday and we will get some new xrays and hopefully get the next surgery scheduled. Once they shave the bone she will be able to stretch that hip out so much more and I just know some stunts she wants to nail will be so much easier.
Now onto Braydon and his appointments last week. All went well. We saw two of his doctors and they both were pleased with the progress they have seen in the six months since they last saw him. They were both concerned about his weight, as we all are. Shawn and I both have been working with him, working out, eating better and trying to mentally help him. I approached the subject of depression and Dr. Braun (his adolescent Dr) said honestly being aware there is potential for an issue is the first step. She did not think at this point and time we needed to do anything going forward just keep an eye on it. She gave us a list of counselors to have him talk to at any point we feel he needs it.
His Neuro Dr (Dr. Robinson) tried to get him to have a tremor in office and could not do it. She noticed he shakes pretty bad, he could not hold a glass of water steady and could not draw straight lines. So she talked about going up in medication because she believes that the shaking and tremors are not necessarily seizures, but without a doubt neurological. Every time we see her now we have to check his liver enzymes and his depakote level. He currently takes three seizure medications.
1. levetiracetam 2000mg twice a day
2. depakote 1000mg twice a day (this is a Valproic Acid)
3. gabapentin 300mg Once a day
#1 does not metabolize through the liver, #2 is known to be very harsh on the liver and #3 honestly is up in the air. I was told that he is not taking enough of #3 to affect the liver.
So when we left her office the plan was to probably increase #2 or #3 to help with the tremors but we needed to wait until the blood work came back. Well they came back they were not at all what we expected. His liver is out of whack and it is a result of the medications. His liver enzymes are too high and his Valproic levels are too high.
So what do we do? After a few days of waiting to hear from Dr. Robinson the decision is Nothing. We have tried other medications to control the seizures and he had some bad reactions to them. The only other one we have tried is so expensive we cannot afford it, and even that is not a true anti seizure medication it is considered a booster to his other meds. Dr. Robinson had her baby yesterday so she is out of our game until May 30th. She wants us to do some more blood work when she gets back and make sure his liver is getting better and not worse, but honestly it is a 50/50.
So pretty much here is our scenario..... we are giving him these medications to allow him to live a seizure free life in hopes that one day he can drive a car, have a job, and live a normal life, but on the flip side we are damaging his liver and are "hoping" it does not get too severe.
We have things to watch for and I will not hesitate to take him in to be evaluated if I start to notice the liver is getting worse. But we are also going to have faith that this is the plan we are supposed to be on. That this is really going to be our Miracle, that his liver functions are just going to get better and his body is going to adjust to the medications to include no more seizures.
Here is a little insight into our world, this blog shows you some of what we struggle with, however honestly I sugar coat and leave things out so that I can stay positive. For example last night Shawn and I were in bed watching TV I heard what sounded like a gurgling noise. I was starting to panic thinking Braydon was seizing. I shot up and looked around and Shawn had to let me know that it was just Braydon laughing. I don't tell you these things to feel sorry for us, I tell you so you know what 1 in every 26 people struggle with everyday. We will be ok and this is just another bump in our extremely bumpy road.
Shawn and I both used to get so angry at what "life has dealt us" but honestly we know we can handle it and that is why time and time again life throws us a curve ball. I do ask however that March 26th is wear purple for Epilepsy day and yet again I am going to ask all of you to bust out your purple for B.